Nursing Impacts Patient and Caregiver Outcomes in Care

Ruth McCorkle, PhD, FAAN Florence S. Wald Professor of Nursing Yale University School of Nursing Objectives

• Describe a program of research in cancer care that has impacted patient and caregiver outcomes. • Describe the critical nursing interventions that were essential in effecting the outcomes. • Identify clinical and policy changes related to the program of research. • Identify and prioritize areas for future collaborative research. A Program of Research

Grounded in Clinical Practice as an Oncology Clinical Nurse Specialist Theoretical Framework

Crisis Theory Caplan Crisis Resolved 6 to 8 Weeks Project Omega

Existential Plight - First 100 days

Weisman and Worden, 1976-77 Program of Research

Cancer Diagnosis as a Time of Crisis Critical Points on Illness Trajectory Cancer Equated with Death Chronic Illness Trajectory Initial or pretrajectory Crisis Phase Acute Phase Stable Phase Chronic Phase Unstable Phase Downward Phase Dying Phase

Strauss, 1986 Series of Intervention Studies

Study 1 Evaluation of Cancer Management NU-01001, 1983-1986 Purpose

To test the effects of home nursing care on patients newly diagnosed with progressive n = 166 Design

Longitudinal Randomized Clinical Trial 3 Groups: Office care only Office care only plus standard home care Office care only plus oncology home care Patients followed 8 months after diagnosis The two nursing groups reported less symptom distress, better function, and worse health perceptions than the office care only groups. We concluded that the home nursing care assisted patients with minimizing distress from symptoms and maintaining independence longer in comparison to no home nursing care. The nurses also helped patients to acknowledge the reality of their disease.

McCorkle, R., Benoliel, J. Q., Donaldson, G., Georgiadou, F., Moinpour, C., & Goodell, B. (1989). A randomized clinical trial of home nursing care of lung cancer patients. Cancer, 64, 199-206. Study 2

The Effects of Home Nursing Care for Patients During on the Bereaved’s Psychological Distress

NR 01626, 1986-1988 Purpose

To determine whether specialized oncology home care services provided to terminally ill patients with lung cancer positively influenced bereavement psychological distress among survivors Design

Longitudinal, Randomized Clinical Trial n = 100 Spouses Followed 25 months after the patient’s death Results

Psychological distress was significantly lowered among spouses of patients who received OCH intervention compared with the other two groups. There were no differences in the groups at 25 months post death. Program of Research

•Cancer not only affects the patient, but the family •Cancer as a Chronic Illness has both gender and age effects Changes in Cancer Care Delivery

• Establishment of • Longer Survival Care • More Family • Earlier Acute Care Involvement and Discharges Responsibility • Increase in • FDA Mandate of Ambulatory Treatment Benefit to Quality of • Shift of Cancer to Life with Improved Chronic Illness Survival Study 3

Home Care Needs of Cancer Patients and their Caregivers

NR01914, 1987-1991 Cancer RFA Purpose

To evaluate the effects of home care services on patients with cancer discharged from the with complex nursing care requirements and a family member caregiver Design

Longitudinal, correlational two group design n = 233 patients with eight different solid tumors n = 103 caregivers Patients and Caregivers were followed for six months after hospitalization. Findings Patients receiving home care demonstrated significant improvements on mental health and social dependency. In addition, caregiver variables were highly correlated with patient variables. Caregivers reported increased caregiver responsibilities and impact on their schedule and own health even when patients improved.

McCorkle, R., Jepson, C., Yost, L., Lusk, E., Malone, D., Braitman, L., Buhler- Wilkerson, K., & Daly, J. (1994). The impact of post-hospital home care on patients with cancer. Research in Nursing & Health, 17(4), 243-51 Program of Research

Hospitalization: A Time of Crisis Critical Point on Illness Trajectory: Initiation of Treatment Cultural Response to Cancer Study 4

Nursing’s Impact on Quality of Life Outcomes in Elders

NR 03229, 1992-1997 Standardized Nursing Intervention Protocol (SNIP) 4 weeks 3 home visits 5 telephone calls Purpose

•To examine the effects of SNIP on quality of life and outcomes for post-surgery older cancer patients at three and six-months post intervention. • To examine the effects of SNIP on family caregivers’ perceived burden. Design

Longitudinal, Randomized clinical trial. Two group design n = 374 patients n = 217 caregivers family caregivers SNIP

Monitoring and Managing Symptoms Providing Direct Care Executing Complex Care Procedures Teaching Patients and Family Caregivers Coordinating Care Counseling Patients and Families Promoting Use of Resources Collaborating with their Providers By November, 1996 •93 (25%) patients were confirmed dead •41 (44%) intervention group •52 (56%) control group

McCorkle, R., Strumpf, N. E., Nuamah, I. F., Adler, D. S., Cooley, M. E., Jespon, C., Lusk, E. J., & Torosian, M. (2000). A specialized home care intervention improves survival among older post-surgical cancer patients. JAGS, 48, 1707- 1713. Results

Patients in the treatment group lived an average of 7 months longer than patients in the control. Women reported greater symptom distress and more depression than male patients. Caregivers with poor health reported less support and more burden. Study 5

Nursing’s Impact on Quality of Life Outcomes Post-Prostatectomy

ACS, #TPRB-98-118-0, 1998-2001 Purpose

•To examine the effects of SNIP on quality of life for men post-prostatectomy one, three and six-months post surgery. •To examine the effect of SNIP on family caregivers’ perceived burden. Design

Longitudinal, Randomized Clinical Trial Two group design n = 120 patients n = 107 family caregivers Patients followed for 12 months Intervention: Three Key Aspects

• Symptom management during surgical recovery • Restoration of urinary continence • Promotion of marital communication and psychosexual function Results APNs were able to help both patients and their spouses communicate better with each other. Men reported more sexual distress than spouses. Spouses reported more depression and marital distress than men.

Pickett, M., Cooley, M. E., Patterson, J., & McCorkle, R. (1996). Needs of newly diagnosed prostate cancer patients and their spouses: Recommendations for postsurgical care at home. Home Care Consultant, 3(2). 1A-12A. Study 6

Nursing’s Impact on Quality of Life and Cost Outcomes in Women with Ovarian Cancer n = 145 women

NR-007778, 2003-2008 Results

• Significantly less uncertainty than the attention control intervention 6 months after surgery. • For the sub-group who received the APN plus PCLN intervention compared with the total attention control group, the sub-group had significantly less uncertainty, less symptom distress, and better SF-12 mental and physical QOL over time. Results • No differences in hospitalizations and oncology outpatient visits. • A significant difference in the number of primary care visits. Women in the attention control group went to their primary care providers more often. • A trend in the number of emergency room visits, the APN group visited the emergency room more often.

McCorkle, R, Jeon S, Ercolano E, Schwartz P. (2011). Healthcare utilization in women after abdominal surgery for ovarian cancer, Nursing Research;60(1):47-57.

Patients at High Risk for Problems • Patients over 70 years of age • Patients scheduled for additional cancer treatments especially combination therapy • Patients hospitalized longer than seven days • Patients with three or more co-morbidities • Patients with late-stage cancer • Patients who live with an ill caregiver, and • Patients who are scheduled for aggressive chemotherapy prior to their incision healing Series of Intervention Oncology APN Studies • Decreased level and number of patient’s symptoms • Improved mental health outcomes for patients and family caregivers • Improved functional abilities • Decreased caregiver burden • Improved patient-family communication • Decreased fragmentation of care • Coordinated services and resource use APN Documented Interventions

Intervention Category n % Instructing post-op self 82 (55%) management Advising symptom 77 (52%) management Clarifying the illness 86 (58%) Discussing psychological 40 (27%) responses Coordinating follow-up care 84 (57%) Acute Episode of Illness • Hospitalization – day versus over night

• Priority is stabilization and discharge

• Goal is recovery

• Is more treatment needed or recommended? Discharge Coordination

• Disease/Illness Status • Level of Care Needed • Level of Psychological Distress • Presence of Co-Morbidities • Symptom Burden • Presence of a Caregiver Assessment of Caregiver

• Availability • Willingness • Skills • Health Use of Resources

• Referral for Short-term follow-up • Symptom Management toolkit • Access to Experts

Patient–Provider Patient/Family Partnership Provider Team

Identification of Patient Needs

Development and Implementation of a Plan To: Support patients:

Link patient / •Provide information family with •Identify strategies to Coordinate care needed address needs services •Provide emotional support •Help pts manage illness/ health

Follow-up and Re-evaluation